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Where's My Scarlett Letter? (oh, snap! SuperKerri's on a tear…)

I have a feeling that unless you emblazon me, and anyone else living with Cystic Fibrosis (CF) with giant, neon letters CF, the following “prevention and control policy” is going to be near impossible to fully implement. First off, I present you with the policy in question:

We are writing to let you know that the Cystic Fibrosis Foundation recently implemented a new infection prevention and control policy for all Foundation events, meetings and offices to protect the health of people with CF. We took this step based on increasing medical evidence that the risk of people with CF spreading destructive germs to one another is greater than was previously thought. Our new policy reflects the advice of leading medical experts on this subject.

The health and well-being of people with CF is our topmost concern — it is at the heart of all we do. We have long had infection control guidelines in place to promote the safety of people with CF. With this new policy, we are acting proactively and immediately to reduce the risk of cross-infection among people with CF.

The key elements of the Foundation’s new policy are:

At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.

At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.

Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices.

We understand that these changes are disheartening and difficult for many in our community. Among the many burdens of CF is that of social isolation. We also recognize the unique challenges that our new policy poses to adults with CF, whose full engagement is vital to helping us better serve the entire CF community. The Foundation embraces and owes so much of its success to the active participation of people with CF in all our activities, from major fundraising and advocacy campaigns to informal meetings in chapter offices.

Fortunately, there are alternative ways we can make Foundation events more accessible to people with CF. We are expanding our use of teleconferencing and live videocasts so people can take part in group activities remotely. We are also exploring other new technologies to help us engage people with CF more creatively and draw on their talents and experiences to strengthen our collective efforts.

We are confident that, with the right tools and in a spirit of partnership, the Foundation will be able to put our new policy into practice successfully. Thank you for your help as we take this important step.

Ok, first of all, do CF patients go to Walmart? Movie theaters? Restaurants? Disney World? What do we do then? Am I supposed to go up to every single person standing within a 6ft radius of my personal space and ask them if they, too, have CF? Really?

I get the B. Cepacia rule. No one needs a deadly infection in their life. But, I’m sorry. I completely REFUSE to live in isolation. I can’t and won’t do it. I will cover my mouth when I cough. I will use UNIVERSAL PRECAUTIONS, like frequent hand washing. But I guarantee that there are worse things that I can catch just by walking into a grocery store or my child’s school. Saying that only ONE CF patient be present at indoor CFF events is excessive. I have attended many events over the years–some CFF sanctioned, others , volunteer fundraising events supported by CF staff–and there have been multiple CF patients present. Some of our greatest fundraising came after those in attendance got to listen to speeches given by myself and other patients present (including parents of young patients). It does a lot of good for patients and families to be able to come together and support each other. Further isolation is psychologically damaging. As for the 6ft space required for outdoor events? Again, I ask, should we label ourselves or wear HAZMAT suits so that others know we are “infected”? Give me a break.

I already take issue with the “reverse isolation” policies while in the hospital. Nurses can’t refill my ice pitcher. I get a ziplock bag of ice and have to let it melt. There are gowns/masks/gloves hanging from the door and everyone who enters is supposed to put it on. 1 in 3 will gown up BEFORE entering. The others will enter, start talking, then return to the open doorway to gown up. The rule is never enforced for visitors. And hospital staff encourages CF patients to go for walks and get exercise. I make 2-3 trips to the cafeteria per day. The CAFETERIA of a HOSPITAL. Do you KNOW what a person can catch down there? And here I go, with no gown, no mask, nothing. But you can’t refill my water?

How can you know whether or not I’m riding in the elevator with or standing in line next to another CF patient?

If you know that you or your child has a SEVERE case…If you know that you or your child are contagious or susceptible to bacteria…USE COMMON SENSE. You don’t need policies put in place to USE YOUR HEADS. Common sense would dictate whether or not you should be in a given situation. But applying a blanket-rule for all events, indoor and out, adversely affects patients and family who CAN and SHOULD publicly associate with others going through the same thing.

These policies are created with the best of intentions, I respect that, and I don’t expect that they–or your opinion–will change. But in this girl’s opinion, they are extreme….ly stupid. Lighten up and live a little, folks. I’m not going to stop doing what I do. We only live once and I’m going to make the most of every minute.